The Biology of Alopecia: A Patient and Public Perspective
Co-created explanations of alopecia biology and RNA-based treatments
Tracy D. Branagan, Dr Chao Fang, Lauren Tonge, Dr Niels Bootsma, Wendy, Nigel Crouch, Chris Docherty, June Docherty, Aidan Lavin, Hollie Panther, Gurleen Oberoi, Dr Kehinde Ross
School of Pharmacy and Biomolecular Sciences and Institute for Health Research's Diagnostics and Therapeutics Group, Liverpool John Moores University, School of Law and Social Justice, University of Liverpool, Alopecia UK
Alopecia is a hair loss condition with notable psychological and social impact. Patient perspectives are underrepresented, making patient and public involvement and engagement (PPI E) in research key to linking lived experience with advances in hair biology and RNA*-based approaches. The RNA Bioscience for Participatory Alopecia Research (RNA-PAR) project addresses this by involving people with alopecia as co-researchers, ensuring research is relevant, responsible and aligned with stakeholder expectations (Figure 1 shows participant-reported alopecia types; n=163).
Figure 1: Types of Alopecia represented in the RNA-PAR study, with distribution expressed as a percentage of total study population.
Methods
- We employed a participatory research approach throughout4, drawing on established co-production frameworks in health research and the UK Standards for Public Involvement.
- Co-researchers with lived experience of different types of alopecia were involved across all stages of the project, contributing to study design, interpretation and outputs. They received remuneration and/or tokens of appreciation for their time, skills and expertise in line with LJMU policy and NIHR guidance.
- Data were informed by a review of existing literature, qualitative and mixed-methods social listening (QMSL), co-creation workshops and an anonymous online survey (Ethics Reference: 25/PBS/005).
- This webpage and poster was co-created by people with lived experience of alopecia.
Results and discussion
- Through co-creation, we learned that alopecia is experienced very differently across individuals and over time.
- Consistent with existing qualitative alopecia literature, some described alopecia as identity-shaping and manageable or neutral; many people move between these perspectives as their circumstances changed.
- Co-producing RNA-based visuals with those affected by alopecia makes complex molecular mechanisms accessible (Figure 2).
- These materials are grounded in lived experience, challenging purely researcher-led models.
Figure 2: Selected co-created outputs. (a) immune privilege in alopecia areata, (b) healthy vs alopecia hair follicle, (c) expanded protein synthesis process, (d) simplified protein synthesis process.
- Limitations: We acknowledge that some perspectives are underrepresented given that we struggled to reach ethnically diverse populations and males.
- Future work should test and adapt these resources with broader and more diverse groups and evaluate how they influence understanding, hope and decision-making about emerging RNA-based treatments.
Conclusion
We co-developed patient-centred scientific materials to effectively communicate alopecia biology and RNA-based approaches. These outputs helped bridge molecular biology and everyday experience.
Next steps include sharing our posters and gathering feedback to refine how RNA research is explained for different types of alopecia. Patient voices will remain central in guiding decisions for the research and development of RNA-based treatments for alopecia.
In our words: what we want future researchers to do
Patient voice recommendations
- Treat alopecia as more than appearance.
- Increase diversity and inclusion.
- Be honest about RNA treatments.
- Make work accessible for all.
- Prioritise participant wellbeing.
- Co-create with patients.
- Use plain, clear language.
- Offer long-term follow-up.
- Share findings openly and quickly.
Acknowledgements
This work was supported by Liverpool John Moores University and developed in collaboration with people with lived experience of alopecia. We thank the RNA-PAR coresearchers, Alopecia UK and academic partners for their contributions.